Background Biomarker research is gaining increasing attention focusing on the preclinical stages of the disease. Such interest requires special attention for communication and disclosure in clinical contexts. Many countries give dementia a high health policy priority by developing national strategies and by improving guidelines addressing disclosure of a diagnosis; however, risk communication is often neglected. Main text This paper aims to identify the challenges of disclosure in the context of dementia prediction and to find out whether existing clinical guidelines sufficiently (...) address the issues of disclosing a dementia diagnosis and of disclosing the risk of developing dementia in asymptomatic and MCI stage. We will examine clinical guidelines and recommendations of three countries regarding predictive testing and diagnostic disclosure in dementia and Mild Cognitive Impairment to show their potentials and limits. This will provide a background to address ethical implications of predictive information and to identify ways how to proceed further. We will start by examining the guidelines and recommendations by focusing on what there is already and what is missing regarding the challenges of disclosing dementia prediction and MCI. Then, we will highlight the novel ethical issues generated by the shift to identify preclinical stages of the disease by biomarkers. We will argue for the need to develop guidelines for disclosing a risk status, which requires different considerations then disclosing a diagnosis of dementia. Finally, we will make some suggestions on how to address the gap and challenges raised by referring to German Stakeholder Conference, which presents us a good starting point to the applicability of involving stakeholders. Conclusions This paper underlines the need to develop empirically based guidelines that address the ethical and social strategies for risk communication of dementia prediction by genetic as well as non-genetic biomarkers. According to our analysis, the guidelines do not address the new developments sufficiently. International efforts should aim for specific guidelines on counseling, communicating risk and disclosing results. We argue that guidelines on disclosure should be developed by involving various stakeholders and should be informed by socio-empirical studies involving laypersons’ needs and wishes regarding risk communication. (shrink)

Shortages in the number of donated organs after death and the growing number of end-stage organ failure patients on waiting lists call for looking at alternatives to increase the number of organs that could be used for transplantation purposes. One option that has led to a legal and ethical debate is to have regulated markets in human organs. Opponents of a market in human organs offer different arguments that are mostly founded on contingent factors that can be adjusted. However, some (...) authors have asked the question whether we still have a reason to believe that there is something wrong with offering human organs for sale for transplantation purposes, even if the circumstances under which the practice takes place are improved. One prominent argument regarding this appeals to the notion of human dignity. It is argued that organ selling violates human dignity. This paper presents a systematic discussion of dignity-based arguments in the organ selling debate, and then develops a social account of dignity. It is argued that allowing the practice of organ selling inherently runs the risk of promoting the notion that some persons have less worth than others and that persons have a price, which is incompatible with dignity. The approach is defended against possible objections and it is shown that it can capture the notion that autonomy is linked to human dignity in important ways, while dignity at the same time can constrain the autonomous choices of persons with regards to certain practices. (shrink)

Referring to Kant’s arguments addressing the moral relationship between our bodies and ourselves is quite common in contemporary debate about organ selling, although he does not provide us with any specific arguments related to this debate. It is widely argued that the most promising way to show the moral impermissibility of organ selling is to mount an argument on Kantian grounds. This paper asks whether it is possible to argue coherently against organ selling in a Kantian framework. It will be (...) shown that by mounting the argument on Kantian grounds no compelling argument can be given against sale of organs, either because the arguments apply to donation of organs, too, or the arguments are not convincing for other independent reasons. In the first section, it will be argued that donation and selling are not distinguishable in a Kantian framework, since the concern about commodification of the body and its parts shall be raised by both actions. In the second section, some contemporary accounts inspired by Kant will be presented and discussed separately. It will be argued that the reasons for promoting organ donation while arguing against selling clash with each other in an unconvincing way. -/- More Info: DOI: 10.1007/s11019-015-9623-z. (shrink)

Predictive medicine presents opportunities to consider later life under conditions of illness, such as dementia. This paper examines how family caregivers (N = 27) assess the opportunity of prediction and early diagnosis of dementia for oneself based on their particular experience. Furthermore, it compares their attitudes with laypersons’ attitudes (N = 43) towards genetic testing of APOE. By this, we elaborate how much personal experience impacts anticipation and affects, but also moral attitudes towards predictive medicine. Differences in our settings do (...) not allow for direct comparison, so our analysis focuses on multiple similarities in the assessments of predictive (non-genetic vs. genetic) testing. Groups’ reasoning showed also differences influenced mainly by personal experience. Family caregivers addressed more responsibility towards family and had more hopes into medical treatments. To cope with the disease, they expressed expectations to start with medicine and care decisions as early as possible. Laypersons, however, stressed self-determination more and expressed worries about the influence of the pharmaceutical industry by referring to unnecessary medication and, implicitly, the medicalization of aging. (shrink)

Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer’s disease at a presymptomatic stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences. Our qualitative study included three groups (...) of affected persons: People with mild neurocognitive disorder, their relatives and family caregivers of people with dementia. We explored their moral motivations regarding predictive, biomarker-based testing and preclinical diagnostics. We interviewed affected individuals in Germany and Israel. Transcripts of 12 focus groups and 12 semistructured interviews were content analysed with a focus on the moral motivations of affected persons in their justification of why they accept or reject predictive testing and early diagnosis. We grouped the underlying aspects of moral motivation into four ethical categories: beneficence as a form of personal utility focusing on well-being, the ties of responsibility linking families and their individual members, the importance of self-determination by later life planning and notions of a good life. In general, cultural parallels among these motives were very obvious. Cultural variation occurred mainly in openness to suicide, scepticism about test validity and emphasis on personal autonomy. The study underscores the importance of counselling for life-planning issues and of informing test candidates about problems with test validity and about the ambiguity of test results. All data relevant to the study are included in the article or uploaded as supplementary information. (shrink)

Die Möglichkeit zur Organtransplantation kreierte neue Probleme für die Medizinethik wie auch für die klinische Medizin. Eines davon, die Organbeschaffung, versucht man hauptsächlich mithilfe zweier Systeme anzugehen. Zahlreiche Staaten haben das ‚OptinSystem’ angenommen, das die Bewusstseinserhöhung sowie Selbstentscheidung der Einzelnen zur Organspende anzielt. Das andere System, das ‚Optout’ bzw. die ‚angenommene Zustimmung’, das sämtliche Gesellschaftsmitglieder als potenzielle Organspender ansieht, wurde von einigen Staaten übernommen. In diesem System sollen Einzelne ausdrücklich erklären, sie wollen keine Organe spenden, anderenfalls werden sie für Organspender (...) gehalten. Indem wir unser Argument auf unterschiedliche Rechtfertigungen zu gründen suchen, behaupten wir, das OptoutSystem zur Organbeschaffung sei eine gerechtere Option in puncto Recht auf Zugang zur notwendigen Gesundheitsfürsorge, und demzufolge solle es anstelle des Optin implementiert werden. (shrink)

In their recent paper in this journal, Zümrüt Alpinar-Şencan and colleagues review existing dignity-based objections to organ markets and outline a new form of dignity-based objection they believe has more merit: one grounded in a social account of dignity. This commentary clarifies some aspects of the social account of dignity and then shows how this revised account can be applied to other perennial issues in bioethics, including the ethics of human embryo research and the ethics of creating part-human chimeras.

The hereafter, one of the main pillars of Islam, has been discussed by both theologians and Ṣūfīs from various angles and interpreted in many different ways. Although there is consensus on the main subjects, there are a lot of controversies in details. One of the Ṣūfīs who authored on diverse problems over the hereafter is ʿAlāʾ al-Dawla al-Simnānī (d. 736/1336). He was a Kubrawī shaykh during the Īlkhānid era. He inclined towards the Ṣūfī path after serving the Buddhist ruler Arghun (...) (r. 1284-1291) for ten years, thanks to a spiritual experience he had. He met with Nūr al-dīn ʿAbd al-Raḥmān al-Isfarāyīnī (d. 717/1317), a Kubrawī shaykh based in Baghdad, and became a disciple of him, granted ijāza (a certificate of authority) from him. Upon his shaykh’s order, he turned back to his hometown and spent his life until his death, in his Ṣūfī lodge raising disciples and writing works. He had contributed greatly both to his own order and to the literature of Ṣūfism with his disciples and written works. As regards to the hereafter, his opinions on the reality of this world and its position against the next, death, the doomsday and its kinds, the existence of the paradise and the hell today and their present location are remarkable. In this article, his views over those problems are discussed in the context of his understanding of mystical training.Summary: ʿAlāʾ al-Dawla al-Simnānī (d. 736/1336) lived between the second half of the seventh century (h.) and the first half of the eighth century, in today’s Iran, during reign of the Īlkhānid’s. Thanks to the connection of his family to the Īlkhānid court, his father and uncle’s administrative positions at the court and his will and efforts, he started to serve Arghun (r. 1284-1291) around the age of fifteen and gained his personal intimacy. After serving him for ten years, he experienced a spiritual transformation and inclined towards a mystical life. He left Arghun for his hometown Simnān, on the pretext of his disease that courtier doctors could not treated, but under the condition that he would turn back after he recovered from the disease. He got better just after a while but did not return. He arrived Simnān at the beginning of a holy month of Ramadan, took off his formal clothes and began to mystical training himself based on Abū Ṭālib al-Makkī’s Qūt al-qulūb. After a while, he met with one of the disciples of Nūr al-dīn ʿAbd al-Raḥmān al-Isfarāyīnī (d. 717/1317) and wondered about him. Then left Simnān for Baghdad with the intention of visiting him. However, Arghun was informed about this and prevented him from going to Baghdad, withholding him for some time. After a while, Simnānī escaped from Arghun and returned to Simnān and wrote a letter to al-Isfarāyīnī on this incident. In response, al-Isfarāyīnī said that he does not need to visit Baghdad, al-Isfarāyīnī would be with him spiritually and ordered him to start his training. Simnānī kept his connection alive with his shaykh during this period via letters and spiritual meetings but he could not meet with him face to face. Afterwards, he could meet him twice and granted ijāza from him.After that, upon his shaykh’s order, he turned back to Simnān and engaged with disciples’ mystical trainings and authoring books. He gained an eminent position in both his order and history of the Ṣūfism, upbringing too many disciples and writing around ninety works. His importance in the Kubraviyya rooted firstly in the fact that the extant sub-branches of the order have him in their silsila (spiritual genealogy). In this regard Simnānī is a key actor within his order. Besides, it is significant that he had great impact on the founders of two branches of the Kubraviyya, i.e. Sayyid ʿAlī Hamadānī (d. 786/1385) and Muhammad Nurbakhsh (d. 869/1464) that indicating his influence among the order itself. When examined from the angel of the history of the Ṣūfism, the most apparent and distinctive point regarding Simnānī is his criticism against Ibn ʿArabī (d. 637/1240) on the problem of being. Notwithstanding, his supreme contribution to the Ṣūfism is his doctrine of latāif, which particularly influenced Pārsā (d. 822/1240), a leading disciple of the founder of the Naqshbandiyya. Likewise his mystical experiences and thoughts on rijāl al-ghāib had also influenced subsequent Ṣūfīs. His thoughts on the problem of khawātir, which is crucial component of Kubravī path, and detailed information given in his books regarding the lights (anwār) and the truth of nūr as well as his explanations about the situations experienced during the manifestation of God can be listed among his contributions to the history of the Ṣūfism.Simnānī who wrote on various problems of Ṣūfism, dealt with the problem of the Hereafter in the context of his understanding of initiation. For the world cannot be disunited from the Hereafter, as his understanding of the Hereafter is examined, his view of the world is studied as well. With reference to the presupposition that there are three distinct dimensions of the world, Simnānī says that man’s relationship with the world should be differentiated according to following three aspects: the world’s being a plantation for the hereafter, the world’s being a place that should be abandoned and the world does not have a reality. According to him the hereafter is a continuous moment, whereas the worldly life is bound by the past and the future. Since the past and the future do not have a real being, hence the world as well does not have real being. Simnānī embraces the death and the Doomsday in an intertwined fashion in the context of his own understanding of mystical training. Approvingly the consensus of the Ṣūfis, he divides the death into two: necessary and voluntary. And he divides the Doomsday into three: big, middle and small. According to this, the wayfarer who has weakened his soul’s evil attributes via the voluntary death observes the situations of the small doomsday. Thereby the wayfarer who observed everything that is depicted in the Quran that will be experienced after the necessary death, gains time to take necessary precautions before the necessary death, which is irremediable. Another issue that Simnānī raises regarding the Doomsday is the sorts of the Doomsday. Based on the different names of the Doomsday, he says that there are different doomsdays each of which is related with one of the latāif situated among human faculties. Ultimately salvation from those doomsdays is possible with a different good deed. Another point that Simnānī comes up with is the problem of existence of the paradise and the hell today. He thinks that the paradise and the hell both exist today, with reference to his own kashf. He relates this narrating the verses and the traditions, which support his view. Besides, he accepts that there are two paradises and hells, one is inside the human nature and the other is out there. According to Simnānī, entering the outer paradise without observing one’s inner paradise is nonsense. This is possible only through a spiritual journey from one’s external being into his/her internal being. In the end, this can only be accomplished via the voluntary death. (shrink)

: ‘Alā’ al-Dawla al-Simnānī (d. 736/1336) was a Kubrawī sheikh lived in Simnān one hundred years after Ibn al-Arabī (d. 638/1240). He authored around ninety works in Arabic and Persian on various fields within Sūfism, raised many disciples. His contribution to the sūfī tradition mainly come to forefront regarding problems like unity, latāif (subtle organs), rijāl al-ghaib (men of the unseen), wāqia (dream-like mystical experiences) and tajallī (manifestation). Simnānī’s understanding of the unity influenced subsequent sūfī’s and specifically Ahmad Sirhindī (d. (...) 1034/1624) and his sheikh Bāqībillah’s (d. 1012/1603) views of the unity overlap with Simnānī’s one. In Maktūbāt, Sirhindī who developed the idea of unity of the seen against the unity of the existence expresses that his understanding of being is the same with Simnānī’s one. Simnānī is also known as the first critic of Ibn al-Arabī’s conception of the unity among sūfī’s. Such that, whenever his name is mentioned the first thing comes to one’s mind has been his criticism against Ibn al-Arabī. However, his criticism against Ibn al-Arabī was not studied as a whole looking at his ouvre. Studying Simnānī’s works, it is seen that his criticism is concentrated on two main problems. First is Ibn al-Arabī’s employing the concept wujūd al-mutlaq (absolute being) for God. He maintains that it is not convenient to use this concept for al-Haq. His second criticism is against a sentence mentioned in al-Futūhāt: “سبحان من أظهر الأشياء وهو عينها”. In this article, causes for Simnānī’s critiques will be discussed and both sūfī’s conceptions of wujūd al-mutlaq and ‘ayn (quintessence) will be studied.Summary: One of the famous names in the Kubrawī tradition, ‘Alā’ al-Dawla al-Simnānī is a sheikh who lived in the city of Simnān in the contemporary Iran between 659-736/1261-1336. In his youth, he served in the service of Arghūn Khan (r. 1284-1291) in the Īlkhānid Palace; and later, after a spiritual experience, he left the palace and turned to a Ṣūfī life. For a certain period, he continued worshipping and riyādhat (spiritual fight against the evil commanding self) on his own, and looked for a guide convenient to his character. Eventually, he became the disciple of the Kubrawī sheikh in Baghdad, Nūr al-Dīn ʿAbd al-Raḥmān Isfarāyīnī (d. 717/1317), and obtained ijāzah (permission) for irshād (guidance). After that, with the instruction of his sheikh, he went back to Simnān; and spent rest of his life with guiding his disciples and writing scholarly works. He authored around ninety works in Arabic and Persian on various fields within Sūfism. His contribution to the sūfī tradition mainly comes to forefront regarding problems like unity, latāif, rijāl al-ghaib, wāqia and tajallī; and influenced subsequent sūfī’s. Simnani’s influences can best be seen on the founder of the Mujaddidiyya branch of Naqshbandiyya, Ahmad Sirhindī (d. 1034/1624), and Sirhindī’s sheikh Bāqībillah (d. 1012/1603). In a letter Bāqībillah wrote to Sirhindī, he mentions certain differences between Simnānī’s understanding of unity and unity of the existence by stating that Simnānī’s path is not that of unity of the existence, and that his shuhūd (seen) is the most perfect shuhūd. Also in the Maktūbāt, Sirhindī expresses that his understanding of being is the same with that of Simnānī’s. Simnānī is also known as the first critic of Ibn al-Arabī’s conception of being and unity among sūfī’s. It would not be incorrect to say that he is more famous for this critique so much so that whenever his name is mentioned the first thing comes to one’s mind has been his criticism against Ibn al-Arabī. The main reason for this is that a letter Simnānī wrote to one of the followers of Ibn al-Arabī, ʿAbd al-Razzāq al-Kāshānī (d. 736/1335) in which Simnānī criticizes Ibn al-Arabī’s conception of unity, was included in the famous work of Abd al-Raḥmān Jāmī (d. 898/1492), Nafakhāt al-uns. This letter’s presence in the Nafakhāt played a vital role in its publicity. For this reason, it can be said that Nafakhāt made Simnānī famous. Yet, it should also be said that the fame stemming from Nafakhāt is incomplete and it is just about one aspect of Simnānī, a scholar who authored dozens of books on the Sūfism. Moreover, it is not correct to defend that Simnānī’s statements in that letter reflects a full picture of his opinion about Ibn al-Arabī. Hence, to have a better understanding of his criticism and thoughts about Ibn al-Arabī, one should explore other works of Simnānī as well. Studying Simnānī’s works, it is seen that his criticism is concentrated on two main problems. First is Ibn al-Arabī’s employing the concept wujūd al-mutlaq for God. His second criticism is against a sentence mentioned in al-Futūhāt: “سبحان من أظهر الأشياء وهو عينها”. To understand the first criticism, one needs to know the meaning both sūfī’s attribute to the concept of wujūd al-mutlaq; and for the second the meaning they attribute to the concept of ‘ayn. First, it should be known that Ibn al-Arabī did not think of being as a form category the members of which are beings. To the contrary, he uses wujūd exclusively for the Eternal, and refrains from using the concept of wujūd for the creation; and calls them mawjūd. In other words, Ibn al-Arabī differentiates between being and existence; and limits the concept of being only for the al-Haqq. Ibn al-Arabī states this view repeatedly in statements such as “al-Haqq (the Truth) is being; things, however, are attributes of being.” What Ibn al-Arabī means by wujūd al-mutlaq is al-Haqq who is wajib al-wujūd (the Necessary Being) and free from all restrictions. Thus, in a certain sense wujūd al-mutlaq means wajib al-wujūd. By writing that “Wujūd al-Haqq is the essence of wajib al-wujūd who is qualified with the perfect attributes of eternity and infinity. Absolute Being is the actions emanating from these attributes. Wujūd al-Muqayyad (the Limited Being) is the outcome that comes into existence as a result of these actions”, Simnānī explicitly states that for him Absolute Being is the actions of al-Haqq. What one can understand from the statements of both sūfī’s is that while by wujūd al-mutlaq Ibn al-Arabī refers to wajib al-wujūd (i.e. the essence of al-Haqq), for the same term Simnānī refers to actions of al-Haqq. Since in criticizing Ibn al-Arabī, Simnānī takes into account his own definition of the term Wujūd al-Mutlaq as the actions of al-Haqq, his criticisms are not valid. In fact, both exonerate al-Haqq from all the conditions. However, while Ibn al-Arabī chooses to verbalize the existence of God with the concept of “Absolute Being”, Simnānī only approves to express the existence of God with the concepts of wājib al-wujūd and al-Wujūd al-Haqq and differing from Ibn al-Arabī attributes the meaning of the actions of God to the concept of Absolute Being.Simnānī’s second critique against Ibn al-Arabī is related to this sentence: “سبحان من أظهر الأشياء وهو عينها”. An annotation that is written by Simnānī on a page which is out of his gloss on al-Futūhāt is highly harsh reads as follows: “O, followers of the most deviant leader! If you hear that one says that your sheikh is identical with his beard, put the claim that he is identical with his rejectomenta aside, should you accept this and tolerate him?” It is understood from these sentences that Simnānī considers the concept “al-ayn” as the essence of that thing. Though, the word “al-ayn” is one of the most multi-meaning word in the Arabic language and in Ibn al-Arabī’s works it is used with various meanings such as eye, the quintessence, spring, water source, tangible being of a thing, the essence of a thing and so on. The usage as “the essence of a thing” is very much common in Ibn al-Arabī’s works. It is interesting that while this word has so many meanings, Simnānī takes one meaning as base and blaspheme against Ibn al-Arabī. It is obvious that the main cause for Simnānī’s critique against Ibn al-Arabī in both problems is his attribution to the concepts different meanings than Ibn al-Arabī and then judging him in the context of his attributes. (shrink)